September 13, 2016 at 5:00 am ET
Concern over rising health care costs has led to some proposals that could be dangerous for cancer patients like myself.
I’ve lived with multiple myeloma, a cancer of cells in the bone marrow for the past six years, ever since it first revealed itself with a terrible headache that sent me to the hospital in 2010.
I suspected it was going to take more than aspirin to treat that headache when they kept me overnight for tests.
“Tom, we have bad news and good news,” my doctor said the following day. “The bad news is that you have an incurable cancer, but the good news is that it’s multiple myeloma.”
You don’t expect to hear the words “cancer” and “good news” in the same sentence, but here I am – still standing six years later, living a relatively normal life.
You name the treatment, I’ve had it – radiation, chemotherapy, surgery, and an array of cutting-edge medications. That’s because multiple myeloma, a blood cancer, takes you on a never-ending roller coaster ride. You’re up, then you’re down. But when you’re down, you’re not out, because of the incredible advances in medicine.
In short, you’ve got to stay a step ahead of the disease.
But the concern over the cost of health care is not about finding ways to streamline the system while maintaining medical advances.
It’s a one-sided attack on pharmaceutical prices. In California legislation calling for so-called transparency in pharmaceutical pricing was withdrawn, but a ballot measure remains that would tie the price state agencies pay for medications to the price paid by the U.S. Department of Veterans Affairs. It sounds good, unless you consider that could actually limit the availability of the new, innovative medicines.
The problem is these measures attack the pharmaceutical industry but do nothing about insurers who often are the ones to negotiate the prices we pay, or who require us pay too much out-of-pocket for these life changing medications.
In fact, one of the biggest threats to a continuing flow of innovative treatments comes from an insurance industry-funded group called The Institute for Clinical and Economic Research, its Midwest affiliate Comparative Effectiveness Public Advisory Council, and the policymakers who support them.
We need them to do all they can to help patients like me — not just whatever they deem to be cost-effective. Instead, ICER is going after treatments for patients with multiple sclerosis, lung cancer and this fall they’re even going after treatments for patients with psoriasis.
But they first came to my attention when they went after the cancer that afflicts me: multiple myeloma. It cannot be cured, but modern medicine has greatly extended survival, and our quality of life; not just by months but for many of us by years, in my case, as I said, by more than six years and counting.
This spring I was on my way to tell my story at a news briefing about ICER when my doctor called to say my numbers are going up. That means that the protein levels are going up, so I’m going to have to go through some more treatment.
Talk about bad timing — but that’s cancer for you. As anyone who has it can tell you, this disease is great at disrupting whatever you’ve got going in your life.
But on the other hand the timing of that call was perfect, because it brought new meaning to my mission:
To implore ICER and all the others who evaluate medical advances based solely on cost, to instead consider life-changing benefits. So as my doctor’s words settled in, I fought the trembling in my voice and wrapped up my speech with a plea to be treated like a human being, not a number.
“I would like the best chance possible to continue my life as productively as possible,” I said.
“And this would not be available if the recommendations of ICER go through.”
I’m horrified by ICER’s cost-cutting proposals, which by one estimate would cost the lives of 44,000 myeloma patients over the next five years.
I don’t intend to be in that number.
This situation doesn’t just affect the lives of myeloma patients. Imagine your doctor, knowing there are treatments that can extend your life – being unable to prescribe them because of an arbitrary conclusion that the price tag is too high!
By the way, if you’re wondering if life is worth living while battling a disease like mine, my answer is a resounding “Yes!”
That’s because I fell in love with a very special caregiver who watched over me when I was first diagnosed with cancer, and I married her three years ago. Tayebeh Hardy joined me at the news briefing in St. Louis. Like me, she fought back tears as she spoke for all myeloma survivors.
“I’m hoping we’ll be able to continue this life,” she said. “We need the medicine. That’s it.”
If not for the treatments I’ve had, we’d never have had these wonderful years together.
Once again, it’s all about timing.
And time itself. I want as much as I can get. I’m hoping the number-crunchers don’t think that’s too much to ask.
Thomas Hardy, 69, is a native of St Louis, Mo. In January 2010 he was diagnosed with multiple myeloma and remains on treatment. He has a degree in biology but turned to art and architecture working in Boston and NY before returning to his native St Louis.
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